The Impact of Cognitive Impairment on Advance Care Planning and Healthcare Utilization in People With ALS

Objective: Half of people with amyotrophic lateral sclerosis (PALS) develop cognitive impairment and/or behavioral changes, which may affect decision-making ability and participation in advance care planning (ACP) discussions. We aimed to determine the impact cognitive impairment, as measured by the Edinburgh Cognitive and Behavioural ALS Screen (ECAS), has on PALS’ ACP discussions and healthcare utilization. Methods: PALS from a retrospective chart review were categorized into 2 groups: cognitively intact or cognitively impaired (ALS Specific Score < 77, ALS Nonspecific Score < 24, ECAS Total Score < 105, and/or ECAS Behavior or Psychosis Score 1+). Documented advance directives (AD); ACP discussions; and rates of percutaneous endoscopic gastrostomy (PEG) placement, tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice utilization were recorded. Late disease stage was defined as ALS Functional Rating Scale-Revised (ALSFRS-R) score ≤ 38. Group comparisons were completed using chi-square tests, Fisher’s exact test, and independent samples t-tests with P <.05 significance. Results: Thirty-three (47.1%) of 70 PALS met ECAS criteria for cognitive impairment. Rates of AD for PEG placement, AD for tracheostomy placement, hospitalization within 2 weeks of death, death in hospital, and hospice enrollment were not significantly different between groups (P =.41,.62,.32,.30,.06, respectively) despite ALSFRS-R score ≥/< 38 (all P >.05). Conclusions: ACP discussions and healthcare utilization were not affected by cognitive impairment despite disease stage. It is unknown if cognitive impairment affects healthcare decision-making processes for PALS/families. Further research examining the effect of various provider communication strategies on outcomes is needed.